missing kidney, polyhydramnios and possible esophageal atresia??

[xxLeighxx]

Hi ladies, my baby was diagnosed with unilateral renal agenesis at 21 weeks gestation, I am now almost 37 weeks and had polyhydramnios since 34 weeks, which is odd as baby only has one kidney! I have been tested for gestational diabetes which has come back fine so they dont know my cause of excess fluid! They have now told me I need weekly scans (ive had 9 already) to check fluid levels and if they continue to be high then baby will have to be tested for esophageal atresia when its born, to check the eosophagus is attached t the stomach! EA, URA and PH can be linked to each other! Has anyone any experience in any of these? Im sure doctors just try and scare you but im now really worried xx

 

[kit10grl]

hi.

I had a few complications diagnosed in pregnancy. I had polyhydroamnios too. Baby was diagnosed with a heart defect too. Like you they can be connected in other ways rather than be separate problems.

My baby was born with choanal atresia. Her nose was completely blocked at the back so she couldn't breathe through it. I assume this causes the poly in a similar way to EA. the amniotic fluid isn't swallowed and reprocessed in your case but in ours baby couldn't breathe in the fluid.

Its so hard the uncertainty isn't it. Have they discussed wether they think your baby might have an underlying syndrome that ties all the symptoms together? Such a stressful time worrying about the future, did you have an amnio? have you considered having one? Even if they do the test they might not be able to identify a syndrome as it obvoiously cant test for every genetic condition out there.

Our amnio came back clear when we did it at 32 weeks so I managed to relax a little but then our little girl was born with CHARGE syndrome a genetic condition so rare only 1 in 10,000 babies get it worldwide.

Feel free to pm me if you want to chat

 

[xxLeighxx]

Hey, thanks for the reply! No they havent mentioned much at all, they have been pretty useless with me tbh ive heard about vacterl syndrome, I think thats abit like charge isnt it? They have said they havent found any other abnormalities during scans but we all know they don't pick up everything, and im sure they dont look for EA on scans, its only all come about the past couple of weeks since ive been diagnosed with polyhydramnios! Everything is just wait and see until bubs is here! Im just having weekly scans to monitor fluid levels xx

 

[maisiemoo]

My daughter was born with TOF/OA - tracheo oesphageal fistula and oesphageal atresia. The OA will require immediate surgery, but to put your mind at ease (if possible) the success rates of this op is very high and by the sound of things, your little one doesn't have the added complication of TOF ( where the upper oesphagus connects to the wind pipe). What the surgeons will be keen to determine is how big the OA gap is. The excess amniotic fluid would be caused by the OA as baby is unable to swallow.

My daughter is now three and although the early days were challenging (largely due to trying understanding the condition), she is a thriving, happy girl and lives a totally normal life - you would never believe she was born with such a condition if you didn't know.

 

[xxLeighxx]

My daughter was born with TOF/OA - tracheo oesphageal fistula and oesphageal atresia. The OA will require immediate surgery, but to put your mind at ease (if possible) the success rates of this op is very high and by the sound of things, your little one doesn't have the added complication of TOF ( where the upper oesphagus connects to the wind pipe). What the surgeons will be keen to determine is how big the OA gap is. The excess amniotic fluid would be caused by the OA as baby is unable to swallow.

My daughter is now three and although the early days were challenging (largely due to trying understanding the condition), she is a thriving, happy girl and lives a totally normal life - you would never believe she was born with such a condition if you didn't know.

Nothing is certain yet, they will test baby once its born but theyve said it could be that! Ive jusy scared myself reading up too much (silly mare)! Im hoping it is purely babys single kidney working over and producing more fluid but I can literally find nothing on single kidneys and poly and my consultant said its odd! When did you find out you dd had it? At birth or pregnancy? Xx

 

[maisiemoo]

We didn't find out until she was born. As easy as it is for me to say, really try not worry until you know what you're dealing with. There's loads of information about TOF/OA and vacterl, and if your little is affected by any of this, much of the information you find is unlikely to be applicable. It is such a vast and varied condition.

I hope all is well and good luck with the birth.

 

[xxLeighxx]

I know, its just easier said then done I have consultant on monday so I will ask more then! Thank you

 

[kit10grl]

Hey, thanks for the reply! No they havent mentioned much at all, they have been pretty useless with me tbh ive heard about vacterl syndrome, I think thats abit like charge isnt it? They have said they havent found any other abnormalities during scans but we all know they don't pick up everything, and im sure they dont look for EA on scans, its only all come about the past couple of weeks since ive been diagnosed with polyhydramnios! Everything is just wait and see until bubs is here! Im just having weekly scans to monitor fluid levels xx

We were like that too. Noone wanted to commit to anything while I was still pregnant. It was all maybes and could be's. I found that really hard as even as late as 37 weeks There was still talk of me having to go to Glasgow to deliver baby. That in itself was stressful as the hospital baby care is in is in a totally sepereate site to the maternity unit, so once she was born she would have been taken across a town I don't know well and I wouldnt have been able to go. We didn't have to in the end but even having her taken to SCBU was hard. it was three hours before I was allowed in to see her.

 

[xxenigmaxx]

My good friend's baby was born with esophageal atresia. He had to have surgery right away, but only stayed in the hospital for 2 weeks, and is doing pretty well now, 4 years later. He has to get his esophagus dilated once and a while so food doesn't get stuck, but looking at him, no one would no he was any different! I hope the best for you and your baby, and I hope he is healthy!

 

[xxLeighxx]

Well good news, I had a scan monday and the mw said as far as she can tell it doesnt look like bubs has esophageal atresia its not a definite and baby will still be tested but its a massive relief! Water levels rose by 3cm in a week though not sure why it keeps increasing! Hopefully its just one of them and there is no reason! Just want baby here safe and sound now xx

 

[maisiemoo]

Well good news, I had a scan monday and the mw said as far as she can tell it doesnt look like bubs has esophageal atresia its not a definite and baby will still be tested but its a massive relief! Water levels rose by 3cm in a week though not sure why it keeps increasing! Hopefully its just one of them and there is no reason! Just want baby here safe and sound now xx

That's fabulous news x